National Quality Registry for Dementia (SveDem)

• Registry Manager: The Board of Directors for Karolinska University Hospital
• Registry Centre - affiliation: Uppsala Clinical Research Center (UCR)
• Start year: 2007
• Classifications used: ICD10
• This registry contains data on: Pharmaceuticals, Diagnoses, Primary Care, Inpatient Care, Specialized Outpatient Care, Follow-Up Data 6-11 months after the case is registered in the registry, Follow-Up Data 12 months or later after the case is registered in the registry
  

Description of registry

As the population of Sweden becomes older, an increasing number of people are affected by dementia. An estimated 150,000 people in Sweden currently have dementia, and approximately 24,000 people develop the disease each year. Although dementia affects many people, there is still a great deal of uncertainty surrounding the condition because not all suspected cases are investigated.

The objective of SveDem is to improve the quality of dementia care in Sweden by compiling data to monitor changes in patient populations, diagnoses and treatments for dementia. The goal is to achieve equitable and optimal care for people with dementia.

SveDem registers information on the content and duration of the examination and diagnosis process, type of housing, dementia diagnosis, cognitive ability with MMT , drug therapy, and support provided by county councils and municipalities. In special housing follow-up, the focus is on nursing care indicators. Quality of life is also assessed.

Population

People who are diagnosed with dementia following a dementia investigation are registered in SveDem (initial registration) and then monitored once a year for the rest of their life. Initial registration is mainly performed by specialized outpatient and primary care clinics, but some inpatient and municipal health and medical care institutions also do initial registrations. Follow-up takes place primarily in specialised outpatient and primary care clinics, and in municipal special housing.

About 24,000 people develop dementia every year, but all cases are not investigated and are therefore not registered in SveDem.

Total volume of registry

31,000 initially registered patients and 14,500 follow-ups. One-third of these are registered in primary care and the rest in specialist clinics. Only a few in municipal institutions.

Volume over the past operating year

7,294 initial registrations and 7,185 follow-ups in 2012.

Coverage rate

The national coverage rate in 2012 was 30 percent, based on a 24,000 incidence figure.

References on validations

The national coordinator has monitored 75 percent of the specialist clinics and found 6.5% incorrect registrations. Ten initial registrations and five follow-ups per unit were monitored. In 2013, 25% of all primary care units with >10 registrations will be monitored.

Note: Variable lists are updated on a regular basis and should therefore be seen as preliminary. For the latest version, please contact the registry.